Good morning, Collette—
Thanks for your kind words, fellow super-warrior :D In addition to the one day at a time thing, sometimes when the pain is super bad, one hour at a time works, or one minute at a time. I use the birth training for breathing and focusing on other things to help with the pain. God knows that at it's worst level, it's as high as second stage labor! When you're pushing your sweet baby out into a new world, different from what they've come to know in the womb! Docs get this analogy, but people who don't know this level of pain may NEVER, EVER know what you're talking about. They have no way of knowing, so I just talk about other things with these people.
The sad fact with my neurologist is that he had/has several TN patients. He was very good at dx, but the follow through on the tegretol blood tests is something where he dropped the ball. Here in my neighborhood, we have few neurologist to choose from as well, but we can go north or south to find many. OHSU is pretty close, it's where Dr. Burchiel works, who is on the board at the TNA site and has helped many people with this problem by the MVD practice of putting a teflon disc between the nerve and offending artery (usually not shown in the MRI!!). I chose Dr. Carson at Johns Hopkins for many reasons. Mostly because he uses muscle from the scalp to painstakingly wrap around the nerve to push the offending artery up off the nerve. He is one of the most caring doctors I have ever met. He has a movie out based on his book, Gifted Hands. Cuba Gooding, Jr. is the actor who plays Dr. Carson.The movie is great, the book is better! He has other books I checked out at the library. He is so down to earth in his writing, you forget he is a world renown pediatric neurosurgeon!
I don't go to the neurologist anymore because the Gamma Knife surgeries left me with a majorly damaged nerve that grew back 2x, and pains me greatly. Plus, on top of all the burning pain, the painful numbness that waxes and wanes is considered anesthesia dolorosa…a road the totally bites, for sure! (Did I just say that out loud?? :D)
My PCP is one that studies up on things in the medical field that he is not fully schooled on…he did his research himself and with each new year, he is more and more encouraging and knowledgeable about this TN problem AND how it effects my sweet hubby :-) Last I saw this PCP, I was concerned that over time (it's been 10 years now), my body would completely break down due to the meds that are needed to keep the pain at bay. His response was epic…he said that if I managed well so far, I should be able to manage these chemicals throughout my lifetime. He did take a huge weight of stress off of my shoulders with this response.
It's so important to find a doc you like, Collette. And, one that is up to par on TN. Is Seattle too far for you to travel to see one of the specialists up there? I understand there are a few that know a lot about this disease. I'm not sure if your insurance carries over to the US, or if you can get an insurance here that can cover you pretty inexpensively, but it may be worth a try? Some people qualify for free care because this disease is so horrid!
Know that it took a good 5 years to finally get this TN monster to a place where meds would control it. Two Gamma Knife Surgeries and one MVD, add 5 years to the mix and I have found relief. The sad fact is that these meds could loose their ability to tend to the pain on my face and scalp. I don't know. I do know that the strategy to rotate more than 1/2 of them, I am kind of tricking my body into NOT getting used to any one med. Nothing is more discouraging than to have your meds fail. Then you go back to step one on the drawing board! Horrible, horrible, horrible…BUT, it is the face of TN and we need to work toward accepting the cards that are dealt (not to be harsh, my friend). BUT, with acceptance in one hand, we can take HOPE in the other and believe that God will one day provide either a remission for us, or the proper med to treat our personal case. He knows our pain, this is not a surprise to Him. It's Him, Collette, that I trust for the right treatments, not the docs. I completely trust Him, and value the docs He opens the door for me to see. I do my best to work with the docs, as we really are a team to battle the TN symptoms.
If you'd like to msg me, please do. I'm not always on the site, but try to check in regularly. It's people like you that keep me on this site, Collette. Your strength and tenacity is amazing and is something others can glean from. Don't cut yourself short on the fact that others may shrink at this disease, yet YOU DO NOT SHRINK. You're open, honest and that is so refreshing! I'm just so sorry that we met because of this pain, I wish it were under different circumstances :-), but am so glad to call you friend!
Sincerely,
LyndaS
collette said:
LyndaS -- you are a super warrior. I have read many of your responses to people and I am on this forum because of people like you.
I am getting my blood work checked periodically so that is good.
I like what you said about fear of future and its prospects. My dad has always said to take one day at a time and I have always applied it to my life, but with the side effects and this pain I guess I don't want one of these days for the rest of my life. I was hoping this neurologist would have more knowledge and be able to try different meds. It takes soooo long to get on a wait list and there are so few neurologists on Vancouver Island.
How did your neurologist gain more knowledge over the years?
Thank you,
Collette
LyndaS said:
Hi, Collette— My PCP, in year three of this adventure, thought the TN was from a virus. I just smiled and thought, you'll get schooled on this, I'm sure, before my next yearly appt. He did, and has been a godsend to both my husband and I. Keep in mind that most docs do not know very much about this unless they are a neurologist or neurosurgeon, or maybe they've studied up on it. It is rare, so their hands are not in this disorder until one of us warriors walk through the door. Our greatest weapon is knowledge about TN. It took my hubby and I a very long time to get a handle on this disorder. I don't want to scare you, but when I first showed the awful symptoms, tegretol was the first line of defense along with Paxil, which later became an enemy. (Another story.) My skin became yellow, along wiith my eyes. When I found out that blood tests should be done with using tegretol, I was so disappointed in my neurologist. I became hyper vigilant about my care. I refused to continue to take meds that were so exhausting and worked with the docs to go down the list of meds until I found a mild side effect med that would help me function well. At the time, my business was thriving and my kids were two, three and nine. I finally settled on neurontin, along with six other meds that are rotated (this is after two gamma knife surgeries and one MVD.). Botox is one of the meds, in the form of the treatment for migraine. And, I recently switched to Gralise, a time release neurontin. I manage very well for four out of seven weeks. Pain control is a beautiful thing...and it takes a while to get it right for your system. YOU are a strong TN warrior who is armed with knowledge that grows each day. Fear is present when we look at the future and it's prospects. But, if we look at this one day at a time, we function really well :D I wish you many blessings!
Sincerely,
Lynda